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Has your doctor been straightforward about your survival?
Hi all. I’m so glad this forum is here. I was diagnosed with papillary serous ovarian cancer, stage IIIc, three-and-a-half years ago. I just finished my third course of chemo. My doctors will not be very frank when I ask “What are my chances of long-term survival?” They say things like, “Every patient is different” “I don’t like to put a number on it” and, believe it or not, “You could be hit by a bus tomorrow!”
I’d very much like to know what other patients’ doctors have told them regarding their chances. Have they been straightforward with you? Or are they vague and uncomfortable discussing odds of survival?
Thank you.
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@ffr, there are a few clinical studies show that pMMR also respond to immunotherapy, regardless of status of MMR, immunotherapy seems all resonds with different levels. So FDA approved immunotherapy to both pMMR and dMMR.
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2 ReactionsMy doctors were the same. I was diagnosed same type and stage as you in May 2004. I had a regular hysterectomy as they didn’t realize it was cancer going in. I didn’t have extra doses of chemo including a few topotecan for a trial I decided to be in. I didn’t have any diagnosed recurrence until May 2022. Once in recurrence they told me a lot of people have recurrences again within 2 years, and from there recurrences occur more and more frequently. It’s been 2 1/2 years now since last treatment ended, and I appear to be in the onset of another recurrence. Still moving slow though and too early to treat.
I think they really only know the signs, not the timeline with certainty. However it is aggravating when they evade the question like that. My first Onc when asked about odds of survival told me 0 or 100%. Rude.
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3 ReactionsHas anyone had, or heard of, Sigma Terra testing? I just heard about it from a neighbor who works for the company. If I understand correctly it’s a way of monitoring for a recurrence for a number of cancers, including ovarian which I have. I’d love to know if it’s something anyone is familiar with.
I have been getting signatera testing since December of 2023. I was diagnosed with serous carcinoma endometrial in June of 2023. I think that’s the test you are asking about?
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1 ReactionDoes this mean your cancer was eliminated according to scans and blood tests? If not, I don't understand what the purpose would be to get signatera testing. Please explain, as I too have serous cell endometrial cancer.
There’s a thread (somewhere) on this sight about blood biopsies like Signatera that I started. Maybe you can go back and find it. There are mixed responses from oncologists (mine is not on board), but I think it’s great to have another tool in the cancer detection toolbox.
signatera is just another tool I am using for my own piece of mind. I have no evidence of disease but that can change at anytime. I still have my chemo port in and it won’t be remove until November, if there’s no reoccurrence. I was told I have a 50% chance of reoccurrence at this point.
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1 ReactionFingers crossed you'll evade re-occurrence! Which chemo treatment did you have?
I had six months of taxol and carboplatin. My cancer was unexpected. I had a spot of blood that I thought was rectal. Thank goodness my primary insisted I see a gynecologist! Gynecologist tried twice to get a biopsy before sending me to an oncologist gynecologist. He encouraged me to get a total hysterectomy, that’s when it was found .
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1 ReactionI'm going to jump back in to this excellent discussion and share how I look at my chances of survival.
I was diagnosed with endometroid carcinoma, FIGO Grade 1, Stage 1a, in 2019. My surgeon (gyn-oncologist at Mayo Clinic) told me that the 5-year survival rate of my women with my diagnosis is over 90%. Good news. And yet I had a recurrence in 2021. That recurrence lowered my 5 year survival rate. Here I am 4 years later returning for my periodic cancer surveillance appointments and the worry about another recurrence or a new primary cancer never completely leaves my mind.
I have learned that I am not a statistic. That's too rational for my emotional mind. I have had a fear of flying in an airplane for many years. I do it anyway and while the fear has lessened over the years it is still there. Telling me that more people die in auto accidents than plane crashes doesn't help me. That's just too rational and does not speak to how I feel as in my emotions.
I'm doing all I can to live a healthy life. I follow my medical providers recommendations. I make a point to keep family and friends as my first priority. I got on a plane to spend 10 days with my brother. And I have reconnected with friends from high school and university.
I do want my doctors to share all the information including survival rates with me. As anxious as I am in these medical encounters I watch and listen to my doctor. Do you look at your doctor's face and body language when you ask questions? Do you ask someone to go with you to your appointments to track and understand what is so difficult to understand at the time?